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Question:
I've been diagnosed with MS since 1999 and my EDDS is 7. My last MRI was October 2016 which showed a bulging disc at C5-6 with some cord impingement. There haven't been any changes in my MRI's since 2008 when I had a major exacerbation which sent me from a slight limp to a wheelchair /walker overnight. Since sometime last year - can't recall exactly when - my legs have become so much weaker. I can't use my walker at all, despite months of PT. My MS specialist suggested a consult with a neurosurgeon. I am very reluctant to have surgery. Do you think this could be causing the leg weakness? Answer: We call this a possible tandem lesion. A "Tandem lesion" is when there are 2 different problems (e.g. MS affecting the spinal cord plus compression of the spinal cord by a disc) affecting the same outcome; in your case worsening ambulation ability and increased numbness in the legs. It is always difficult to determine if a disc pressing on the spinal cord is contributing to walking or spinal cord related problems when you’ve entered a progressive phase of the disease. This is for 2 major reasons: 1. People with progressive MS often do not exhibit obvious new lesions (white spots) on MRI imaging over time and rarely show evidence of new enhancing lesions. However they do exhibit evidence for increased brain and spinal cord atrophy gradually over many years. This atrophy would not be noticed on yearly MRI scans but would be noticed if scans from now were compared to your scans in 2008 2. Disc bulging that deforms the spinal canal or even presses on the spinal cord is very common in people with or without MS and often causes no symptoms at all Generally, I do not consider surgery on my progressive MS patients for disc related problems unless at least 1 of the following criteria are met: 1. There is refractory pain directly related to this disc related problem 2. There is severe cord compression with evidence of cord signal changes at the same level consistent ischemia or gliosis 3. There is acute spinal cord injury from trauma (these cases are obvious) I also do not favor abrogating this decision to a neurosurgeon. Recovery from spine surgery can be difficult with many potential complications . These complications increase in patients with more severe MS. Good luck and make sure you get several opinions if you feel uncomfortable with the recommendations provided. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have RRMS and my course of my MS is pretty stable. My new neurologist looked at my MRI in December 2016 and there was no sign of new activity. His opinion was to just use medication for my symptoms and no disease modifying drug (DMD) he asked my opinion but I told him i will follow his advice. I am very happy with my neurologist and trust him. I do seem to get a lot of people that have MS, via social sites, not understanding why my neurologist didn't give a DMD. Diagnosed in 2012 and no relapse since. Your thoughts? Answer: Excellent question. While I can not comment on your case without knowing the particulars, it is true that not everyone requires a disease modifying therapy. The threshold for starting DMTs differs between MS specialists. I often will recommend monitoring with every 6 month MRI scans in people who have experienced one attack (as in your case) with few risk factors for disease activity and progression. Risk factors, usually in combination, that would make me consider starting a DMT in a case like yours would include: 1. More than 3 typical white spots on your Brain MRI or multiple white spots on the spinal cord 2. Multiple enhancing lesions on your MRI 3. Multifocal involvement at onset 4. Limited recovery from initial attack 5. Frequent attacks in the first 2 years 6. African american or latino background 7. Males 8. Early evidence of brain atrophy Hope this helps Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Question:
I was diagnosed with RR MS in 1996 and have been secondary progressive for at least 10 years now. I have had multiple organ involvement, galbladder non-functioning, bladder dysfunction with surgery x2, autonomic nervous system involvement which affects HR, BP, Temp, and other functions. I have had many flares in the last four years that have led to total loss of function of my esophagus, severe spasms of the esophagus, I was recently diagnosed with the bottom half of my lungs no longer functioning due to muscle weakness from MS. I have had two oxidation and HR sleep monitor tests done in the last two months and they both indicate that I need oxygen but the second test was markedly worse than the one done two month's ago. I can't seem to find information anywhere that talks about prognosis. I am a very straight forward person and like to deal with the reality of things so therefore I would like to know if there is any information out there that addresses the prognosis of terminal muscle loss to the lungs due to MS. Answer: There is no single factor that lets us know when our MS patients require ventilatory support, This becomes increasingly common in patients who are wheelchair bound or bed bound with severe weakness of both the legs and arms. One of the first things patients notice is difficulty sleeping especially if trying to sleep flat. Breathing problems are often worse at night and lead to oxygen desaturation and fitful sleeping. The use of BiPAP can help prevent your respiratory muscles from becoming too tired to work and improved your sleep. Use of BiPAP in this situation can make you feel much better during the daytime You will need to have a good discussion with a pulmonary doctor to help you with this problem. We are not very good at predicting longevity very well but problems with breathing and swallowing both tend to be poor prognostic factors. Good luck to you Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Question:
My daughter (age 32) has been diagnosed with MS - one of her early symptoms has been an eye problem when she looks at an object or TV or anything...it seems to be bouncing up and down... She has been on a med call Primidone 50mg for nearly one year and at first it kept it from worsening. In the last month - the bouncing seems to be increasing. Is there another medication that she should consider to help with this issue. Thank you for considering my request. Answer: Vision bouncing up an down is caused by either downbeat or upbeat nystagmus. This is common in MS. Drugs commonly used to treat this problem include Gabapentin, memantine, 4 aminopyridine and baclofen. Please see our page on Nystagmus to learn more READ MORE You may want your daughter to see a neuro-ophthalmologist who specialists in adult eye movement problems. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Is it safe to undergo face laser for pimples for people with multiple sclerosis? Answer: Please type in "laser" in the search field in the upper right corner of this page and you will see a lot written about laser usage and MS. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
In recent months I have incurred frequent numbness in my hands as well as terrible pain in both wrists......I've noticed a fairly rapid vision deterioration, fatigue, and bumping into things.....Does this sound like typical symptoms of M.S. Answer: Numbness in the hands and pain in the wrists can be caused by many things including common conditions like Carpal tunnel syndrome and less common entities like MS. Fatigue is also associated with many illness. Visual deterioration, if bilateral and progressive can be caused by MS but more often MS causes rapid visual deterioration in just one eye. Bumping into objects can be caused by visual loss or a problem with your balance. You certainly require an evaluation by a good neurologist asap. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I recently just went back to my doctor. He is wanting to take me off of Copaxone. I have been on this medicine for almost a year but my doctor does not think it is working. I was told I had MS in January of 2016. I started Copaxone in May and have been on it since. However, in February I had two relapses and a new MRI that showed more lesions. My doctor want me to now try Gilenya but I am nervous about this because of all of the side effects. I have had optic neuritis and that is one of the side effects of Gilenya. Do you think there is a better option? Answer: If I understand you correctly, you were diagnosed with MS in January 2016, started copaxone in May 2016 and experienced 2 relapses and MRI activity in February 2017 while taking copaxone First, If these facts are correct, I agree with your doctor that the copaxone is not working. You’ve been on it for over 6 months with both clinical and MRI evidence of continued disease activity. Second, you have many options at present; Gilenya may be a good option for you. GILENYA DOES NOT CAUSE OPTIC NEURITIS. A small number of people experience macular edema, which is entirely different and unrelated to optic neuritis. This is why we monitor people on Gilenya for the first 6 months of treatment with every 3 month Optical Coherence Tomography. This is a very simple test that only requires bouncing a harmless light source off your retina. Third, Gilenya is very well tolerated by most patients. In fact this is one of the benefits of this drug. Like all disease modifying therapies there are some potential risks (e.g. a slight increased risk of Shingles or transient heart block) but we mitigate these risks through our pretesting and monitoring protocol There may be many other DMT options for you to consider at this time as well, depending on your disease characteristics and risks of disease worsening. For instance both tecfidera and aubagio are good oral options as well. Your current MS specialist is in a better position to recommend the most appropriate of these 3 oral drug options Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I am 34 years old, newly diagnosed with NPRMS, JC negative, not neutropenic, and physically active with no mobility issues. I have had two doses of 500mg Rituximab, and both times I had allergic reactions. The first dose I had a sore throat and hives. The infusion nurse stopped, increased the diphenhydramine and steroids. After the hives cleared, she slowed my infusion rate, and it did not happen again. The second 500mg dose, approximately six months later, also gave me an allergic reaction. I believe the dosage of pre-medication was higher. This time, the sore throat was present, but my chest was so tight, it was difficult to express myself to the nurse. The infusion was stopped, the diphenhydramine and steroids were increased, and I was too sleepy that I could not explain that it was difficult to breathe. My husband intervened, the nurse dismissed it as MS hug, and continued the infusion. Within the few days, I had horrible lower back pain, the skin on my face and hands were peeling, a relentless headache, nausea other stomach upset, and shaking. I followed up with a physician who said it was all typical for an allergy to Rituximab, and suggested I continue taking oral diphenhydramine and a higher dose of ondanestron. She also suggested that a different DMD might be a better fit. My neurologist (an MS Specialist) did not recommend changing to Ocrelizumab after the first allergic reaction; I have not spoken to him about the situation with the second dose. How often do reactions like this occur after the initial dose? Would a reduced dose with more than a six-month frequency alleviate this? Would it be possible to do a non-convential slower IV drip without increasing the infusion rate? Would it be better to switch to something different, such as Alemtuzumab or Ocrelizumab? I am not a medical professional, and it is not my place make this decision; I would appreciate any input before I discuss this with my neurologist. Thank you for your time. Answer: Rituximab and Ocrelizumab are very different molecules, so I would not necessarily expect the same reaction. Rituximab is a chimeric antibody (part human and part mouse) that attaches to a part of the CD20 molecule that is different than the Ocrelizumab binding site and destroys these cells through both complement mediated cytotoxicity and antibody mediated cytotoxicity. Many people attribute the rituximab infusion reactions to activation of complement dependent cytotoxicity. In contrast Ocrelizumab is a fully humanized IgG1 class monoclonal antibody that destroys cells bearing CD20 predominately through antibody dependent cytotoxicity. Both have a relatively high rates of infusion reactions (40 % with Ocrelizumab and even higher with rituximab) but in my experience these reactions tend to be less severe with Ocrelizumab and mostly with just the first infusion. We premedicate everyone with acetaminophen, diphenhydramine or Pepcid and methylprednisolone to minimize any reactions. Slowing down the infusions if a reaction occurs also helps significantly. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I recently became an aid, to a 45 year old woman with MS and she is completely bed bound. She has been having severe pain and also has a bed sore, on her coccyx and she has been using donut pillows, with no success. I read online, these types of cushions can make the pain and pressure worse. I have been researching non-stop and there are so many different pillows and cushions out there. I'm having a hard time making a final decision. I thought you may have a suggestion, as to which cushion would work best for my patient, in her particular situation. Any suggestions, at all, would be greatly appreciated. Thank you and best regards, Alison Answer: I think it is great that you are advocating for your patient. Does she spend any time in a power wheelchair? If so she should be in a custom chair (tilt in space) with a special cushion (Rojo); which will help keep pressure off her coccyx. It also sounds like she is a candidate for a special type of bed, which is used in the hospitals for patients who have wounds. There are beds with sand that rotate so people don’t spend too much time in any one position; there are also “fluid immersion” beds and air mattresses, all which work similarly. If she has a history of wounds (as you say) she may qualify for one through insurance. The best thing to do is seek out a wound care professional and discuss her options! Sarah Frank, PT, DPT, MSCS Outpatient Rehab Mt. Sinai Rehabilitation Hospital 490 Blue Hills Ave. Hartford, CT 06112 She needs an alternating pressure mattress, if she is developing bedsores. She should also be seen by plastic surgery in a skin care clinic for people with bedsores. Either the skin care clinic or her PCP should be able to help her get an alternating pressure mattress. lastly if she is having problems with continence, it is very important that she have frequent diaper changes to keep her skin dry and uncontaminated Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
My name is Steven and I was diagnosed with RRMS in 2005. I tried Copaxone, Rebif and for the last 3 and a half years Tysabri. I had to stop Tysabri because my JCV reading was 3.33 positive. After 2 weeks I did another blood test and the level dropped at 3.16 which is minimal however in the right direction. I had an MRI done and my neurologist told me to start Tecfidera immediately. I am very afraid to do so because it may exacerbate the JCV levels. Tecfidera has the same issues with PML as Tysabri. Should I risk it and start the therapy? I need a honest response. I am very hopeful for the new medication ocrelizumab so I can start it. My neurologist said that if ocrelizumab doesn't work for me, I need to wait 2 years until I start a new therapy. Please help!!!! Thank you very much!!! Answer: Steven, your questions reflect a some fundamental misunderstandings that are common among both MS patients and some providers, so let me take some time to explain. 1. Do any other disease modifying therapies have the same issue with PML that we see with Tysabri ? The answer to this is absolutely no. There have been over 600 cases of PML with Tysabri and only rare, scattered reports of PML with other DMTs such as Tecfidera and Gilenya. Your risk of PML at present is about 1 in 100 or 1 %, whereas, we can not even calculate your risk on Tecfidera, because the risk is so low. There is also no known association between JCV antibody index values and risk of PML on Tecfidera or any DMT other than Tysabri. More importantly, your risk of PML starts decreasing as soon as you stop Tysabri with a minimal risk of PML 3 months after stopping Tysabri, as long as your MRI scan shows no evidence of early PML at the time you stop the tysabri. 2. What is the best DMT to start after stopping Tysabri? This is more complicated; a lot depends on your risk of relapsing in the 6 months after stopping Tysabri. If your risk is high (criteria include multiple enhancing lesions or multiple relapses in the year before started Tysabri), then Ocrelizumab is an excellent choice. If your risk is not particularly high, then both Tecfidera or Gilenya are good choices. You will need advise from your MS specialist on the best choice given your circumstances 3. What is the best time to start a new DMT after stopping Tysabri? This also depends on your risk of relapse after stopping tysabri. If your risk is considered low, wait 2-3 months and then obtain an MRI of the brain to make sure there is no evidence of early PML before starting a new DMT. If your risk of relapse is considered high, get a repeat MRI asap and start the new DMT asap, if the MRI shows no evidence of early presymptomatic PML 4. Do you need to wait 2 years after starting ocrelizumab to start another DMT? We have little information on this subject at the current time. A lot depends on whether there is any significant evidence of immunosuppression when you stop the Ocrelizumab. We often use drugs like Ocrelizumab (so called anti CD20 agents) as an induction therapy (just the initial 2 doses) and then start another DMT immediately as maintenance therapy; so clearly many of us feel that this is a reasonable approach. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I want to do hair laser removal. they usually ask if I am using cortisone. my question is : is Avonex considered to be Cortisone? Answer: None of the interferons, including Avonex, are steroids; Go ahead with the laser removal and don’t be concerned. Happy smooth skin :) Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have severe MS disease. What type of bedroom carpet should I get? Answer: The type of carpet you need depends on whether you are still walking; If you are still walking you probably want a hardwood floor or very low carpet (1/4 inch pile) without a pad that you will not catch your foot on when you walk. If you are wheelchair bound you can probably use a 1/4 or 1/2 inch pile carpet with or without a pad. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Gait assessment reveals foot drag twelve times in the one, suspect foot, with negative EMG, but surprisingly 5 times in the opposite, non-symptomatic foot. I had testing after conscious elevation and maintenance of temperature and fatigue. What does this mean? - context is non-diagnosed but suspected MS patient? Thank you for your awesome website. Answer: There are several reasons people intermittently drag a foot. MS is certainly one reason but another cause is something called kinesogenic dystonia. If it is intermittent, ask your doctor to refer you to a movement disorders specialist for an opinion and make sure someone videotapes your walking from start to dragging. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I've been experiencing tingly in my hands, arms, feet, & face... I did a MRI to check for MS, but everything came back fine... it's been a year that these symptoms won't seem to go away. Is there any way when they do the MRI the MS won't show the first time? Answer: As I have said many times on this site (there is even a blog on abnormal sensations), tingling is a very non specific symptom that occurs normally and with a variety of benign disorders (e.g. migraine). In the absence of findings on exam or with diagnostic evaluations (e.g. MRI) or with follow-up evaluations, it is unlikely to be multiple sclerosis. I hope this helps Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I've had numb legs for almost 2 months now. But it's not at all like what I've been reading with other MS numbness. My numbness is totally symmetrical, starting just below both knees and stops just above both ankles. The sensation is also more in the front part of The legs and not in The calf area so much. The sensation is also slightly stronger in my right leg for some reason. The other weird thing is the sensation virtually disappears when I'm wearing shorts or no pants. If there's no material touching my legs, they almost feel totally normal. But the second i put pants back on. They're numb again. It's so weird and it's making me insane. My anxiety is at an all time high. I've had 2 MRIs with and without contrast on my brain and c-spine. I also had an EMG done. Blood work. Neurological physical. Everything came back completely normal and my neurologist says my symptoms are confusing and astounding but he seemed 100% confident it was not MS. But no one can give me a straight answer about my symptoms. I'm desperate. Answer: Numbness is an imprecise term. It is not synonymous with a lack of sensation or diminished sensation to some modality such as temperature, painful needle pricks or touch. When most people tell you they are experiencing numbness they are referring to a spontaneously generated sensation not a lack of sensation. This spontaneously generated sensation could take the form of pins and needles such as when your limb, “falls asleep”, electrical shocks or even burning sensation. Sometimes people are referring to a normal sensation that is distorted when they tell you they are numb. For instance, light touch could feel prickly or burning. This could explain your abnormal sensations when you touch your leg below the knee or you wear pants. Generally speaking, we are most concerned when an individual has decreased sensation to a testing modality in a particular area. For instance, the person may not feel a pin prick or even light touch in an area. Spontaneously generated sensations (e.g. burning, electrical, pins and needles, pain to light touch) without abnormalities on examination are less specific and often occur due to nerve irritation or during the chronic/recovery phase of injury. You refer to abnormal sensations (“numbness” ) between the knee and your ankle but mostly on the front of the leg. The only nerve with a distribution in this region would be the saphenous nerve, a sensory branch of the femoral nerve. The sensations could also be coming from the central nervous system but it would be unusual for the sensation to stop at the ankle. A good neurologist should be able to figure our the problem given time. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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